Goodness gracious. What am
I going to do about this body. Ouch! It hurts!!
Well, this may not be
my best day to write but they wanted me to explain this—chronic
pain, that is.
Ouch! Do I really want to write about this? Do YOU want to read about
this? Maybe not, but let me try.
First of all, there
is a myth out there about this condition being my fault. This is
not my fault. End of discussion, sort of. I’m
not going to stop there. The causes can be many: traffic accidents,
work accidents, sometimes wars and other violence, illnesses—even
not being treated well by other people. And sometimes—sometimes—we
honestly do make mistakes with our bodies with what we eat, how we
live our lives, things that often can harm us; and yes, can cause
us illnesses, disabilities, and pain. Ouch!
I have fibromyalgia.
This is a chronic (meaning constant and on-going) pain condition
that involves all the muscles and connective tissues of my body.
Ouch! This means that my muscles are very stiff, can get weak,
hurt a lot and are prone to pulling or tearing easily. This means
I get hurt more easily than others. For instance, if the vehicle
I’m
being driven in bumps a lot, makes sharp turns or sudden stops, it
may injury me. In the cold weather I can’t go outside when it’s
below forty degrees or so without it causing severe pain. In temperatures
below freezing, my body can collapse. Oops! Not good.
Did I say I have spinal damage? Lots. From my neck down through my
lower back; some spinal injuries are from long ago, and some have developed
over the last thirty years. I also have arthritis in parts of my spine,
hips and other joints.
So all this limits my
life a bit. Yep. And I don’t like it.
In fact, wanting to or not, I get mean sometimes. I get impatient with
people, even when they’re trying to help me.
Sometimes I want others
to understand that it is not my fault that I get impatient. Or
that they get very impatient with me. It’s
just that I have to take a lot of time and do things slowly so I don’t
hurt myself, don’t exhaust myself. It’s amazing how other
people are so impatient. Especially behind the wheel.
So what helps? What has kept me growing, changing, striving and hoping
over the years?
It helps to laugh. Really
laugh. When I was first diagnosed with fibromyalgia, and started
acknowledging how much pain I was in … anyway, when
I started dealing with it, I started looking up Joke Web sites. Good
jokes now, not the ones that make fun of others, but instead make fun
of life. Some of them are children’s jokes. You want to hear
one?
“What do you call a group of rabbits walking backwards...a receding
HARE line.” Ouch!
The first person who
made me laugh about disability was Kathy Buckley, in a PBS performance
she did a few years ago, called “No Labels;
No Limits.” She’s the first hearing-impaired comic in the
United States and she’s great!
It also helps to do things that are FUN.
Micheline Mason, an inclusion activist in Britain, says that one of
the best things we disabled people can do for ourselves is to be gentle
with ourselves in public spaces.
Find friends who are willing to go to the plushest, most pleasant
and caring atmospheres possible, with the healthiest food to eat.
My favorite coffee house is the Fireroast Mountain Café on
38th Street in south Minneapolis. They have a large cushy couch,
and unless I have to share, I make myself and my cane at home on
it. It’s pleasant to share time and food or tea with someone
and not be in lots of pain by sitting on hardback wooden chairs.
Look for the places that care about comfort and softness, and your
health! And places that treat you like you and what you deal with
matters.
I’ve learned how to do that more in recent years. I grew up
very serious, very poor working class, and didn’t know how to
change my life to learn how to relax more and not hurt myself. Now
I do art when I can manage it physically. I like to listen to music
and to sing. I’m still learning to be gentle with myself. When
I can, I go to performances of art and music. I like calming things;
noises that are raucously loud or abrasive can actually activate
the nervous system, and make me hurt more.
And one more good thing.
Here in Minnesota, it’s really not
always OK, from a cultural point of view, to have feelings. Yet, I
have anger, fear and grief about this pain. Sometimes the anger itself
can cause me pain. I know when I’m angry. I know when I’m
scared. I do best with people who know I am good, who know that I
matter, who know that crying, laughing, or healthy anger make for
less pain. And who allow me and support me doing this. I have sobbed
myself to sleep with this pain, avoided hitting or yelling at others
by beating out my pillows (my poor pillows).
It’s hard—but
important—to remember
that sensitivity is a human quality, and emotions are a response
to pain, joy, grief or happiness. And we are certainly human. Ouch. ![]()
